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Old 02-25-2009, 05:06 PM   #2
Senior Veteran
Join Date: Feb 2006
Posts: 1,002
KeelaC HB User
Re: Just diagnosed with Stargardts disease..

Sorry to hear about your diagnosis. This is an allowable site I can post:
It's informative and straightforward, and best of all, the authors say Stargardt's patients never lose their peripheral vision.

The gene has been identified, so there is hope, also, for a cure in your lifetime.

I don't have Stargardt's, but I have the same symptoms--no central vision. I've had it for ten years. It's a real bummer, particularly not driving, but it could be worse.

Contacts shouldn't be a problem.

At first, light bothered me so much I wore sunglasses indoors. You get used to it somewhat. I went to a welding supply store and got a pair of plastic welding glasses (very dark) for sunny days. I now wear yellow (or maybe it's orange) tinted sunglasses. I find they cut down on the glare but don't make things too dark.

There are low-vision specialists who can help with visual aids (I go to a low-vision optometrist). Windows has a perfectly good computer magnifier in its Accessories/Accessibility file. There are foundations for the blind in different states that can supply other useful items and advice. Closed-circuit tv viewers are wonderful if you can afford one. You can search the internet for low vision and vision aids.

Don't know if, eventually, you'll have trouble looking through a microscope.

It's important to protect your poor retinas from strong light. The article above advises wearing sun filters outdoors. I've mentioned on this forum before the possible danger to patients with compromised retinas of having a fluorescein angiogram. It involves very bright light that can harm the photoreceptors. You should discuss that with your specialist. The last time I had that test, it was done in an abbreviated form, with a timer running.

Let me know if you have more questions.